How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

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Artist: Zeraph Dylan Moore

There is no test that is officially-recognized to “prove” someone has ME or CFS. However, some doctors and patients find the tests on this page to be helpful.

Please keep in mind that many people are not diagnosed based on testing. If you are trying to get diagnosed, take a look here: How to Get Diagnosed with ME or CFS

If you are not sure if you have ME and would like to learn more, take a look here: How Do I Know if I Have ME?

Cognitive Testing

Many people report that cognitive testing was helpful for documenting issues with memory, focus, concentration and cognitive function. Learn more about How to Get Neuropsychological Testing. You might also be interested in reading these Sample Neuropsychological Reports for ME. If you live in the US, here’s a page on How to Find a Good Neuropsychologist.

Tilt Table Tests

A tilt table test is a test used to document changes in blood pressure and heart rate for patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Some readers report that beta blockers or other medications can interfere with the test results. Here’s how Iris Took a Tilt Table Test

LEAN TEST

Some people who cannot get a tilt table test, instead try the NASA Lean Test (a “poor man’s tilt table test”). It does not require special equipment and any doctor can do it if they are willing. Some people have had success printing out the form and instructions, bringing it to their doctor, and requesting a special appointment to perform the test.

CPET

The CPET is a cardiopulmonary exercise test that is used sometimes used to document impairments in people with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. The CPET test is used by some people in disability claims. Sometimes this works out great, and sometimes people have regrets. Learn more about the pros and cons of the CPET.

Brain Scans

There are several different types of brain scans people have found helpful in documenting ME and related conditions: SPECT and xenon SPECT scans of the brain, PET scans of the brain and EEG/QEEG brain maps. The Hummingbird Foundation Testing for ME explains each of these tests. You can read the short explanations or the long explanations. In some cases, MRIs may be useful though these do not always show results. Some of our readers report that Functional MRIs were more helpful.

Blood work

There is no specific blood test that is universally recognized as accurately measuring CFS or ME. However, the links at the bottom of this page include many blood tests and other types of medical tests that some patients and doctors have found helpful.

Excluding Other Conditions

Most people test for other conditions before they are diagnosed with ME or CFS. Test results showing other conditions have been excluded can be important documentation. Examples of illnesses that can be ruled out: Addison’s disease, Cushing’s Syndrome,  hypothyroidism, hyperthyroidism, iron deficiency, sleep disorders, lupus, Multiple Sclerosis, B12 deficiency, Lyme Disease, and psychiatric disorders.

Romberg Test

If you have problems with balance or disequilibrium, a The Romberg Test is a small, simple test your doctor can do in her office anytime. It may not give you a great deal of information, but if you are looking for more documentation on your condition, you can ask your doctor to do a Romberg test and to note the results in your records.

Related Conditions

If you think you may also have Lyme Disease, POTS, Fibromylagia or other conditions that are common in ME patients, please check out how to How to Collect Medical Evidence for Other Conditions


What Helps?

Which of these tests helped people the most? Cort Johnson from Health Rising asked 800 people this question. Here is their list of Which Tests Helped the Most (click on “View results” to see what everyone answered).

Applying for Disability

If you live in the US and you are applying for disability, you may wish to check out this list of Tests from the Social Security Ruling for Chronic Fatigue Syndrome. Happy news: The ruling recognizes “any other laboratory findings consistent with medically-accepted clinical practice.”  So, any of the other tests on this page also has the potential to be helpful.

Can’t Afford Tests?

In the US, check out How to Get Free or Cheap Lab Tests

Lists of Tests

🌸 The ME/CFS Roadmap for Testing and Treatment was created by an ME/CFS patient. It includes detailed information on testing and interpretation of test results.

🌸 Cort Johnson and Health Rising has compiled this collection of ME/CFS Treatment Resources. They also have an email newsletter which can help you stay informed on the latest developments in testing and treatment.

🌸 The Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners includes a long list of tests. On page 10 there is a worksheet that can be filled out by a doctor. This booklet is written for doctors, so it can be difficult to understand.

🌸 The Hummingbird Foundation website includes a: Short list of names of tests, plus a longer summary of each test, plus an even longer detailed explanation of each test.

🌸 A lists of tests is available on the website for the Treatment Center for Chronic Fatigue Syndrome. They also publish a longer guide explaining tests in more detail.

🌸 The IACFSME published an ME/CFS Primer for Clinical Practitioners that includes a long helpful list of tests.

🌸 Katherine T Owen has compiled an excellent list and explanation of various Chronic Fatigue Syndrome tests on her blog Healing CFS/ME (keep scrolling down, the list is in the middle of the page). Includes special information on laboratory testing in the UK.

🌸 The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis includes a list of tests for ME, plus tests for related conditions that occur in ME patients.

🌸 Article by Maryann Spurgin, Phd. Recommended lab tests are at the bottom of the page: Circulatory Impairment in Myalgic Encephalomyelitis: A Preliminary Thesis

What Do You Think? 

Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working. 

Updated May 2018. If you found this page helpful, please share it with others by pressing one of these magic little buttons: 

2 thoughts on “How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”

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